“We spent many wonderful hours just enjoying our sweet little girl. There are many things I wish could have been different but I will always treasure the time I had with Madilyn.”
At our 20 week ultrasound we learned we were having a girl! We were so excited. My husband left to buy pink donuts and run a couple errands while I talked to my doctor. I expected a quick easy check up but things did not go that way. The ultrasound showed some abnormalities and after a NIPT test it was confirmed that our baby had trisomy 18. We were devastated.
We learned that trisomy 18 used to be “incompatible with life” but is now “life limiting”. The first few weeks after her diagnosis were confusing and difficult. We were asked by every doctor if we were planning on continuing the pregnancy. All were respectful of our wishes and never pushed us to make a different decision but it was still overwhelming to have to clarify multiple times that we wanted our baby to be given every chance to live. We were eventually able to talk with more doctors and find hope. There was always risk but finding that hope was so comforting and a huge blessing.
We started planning for the worst and hoping and planning for the best too. We met with specialists and made a plan to care for our Madilyn. She had a large VSD and a suspected diaphragmatic hernia. I worried every day that her kicks would stop and I would lose her before she was born.
Around 33 weeks I began doing regular fetal non-stress tests. We were barely passing. At 35 weeks 5 days we had a non-reassuring non-stress test. We were sent to a hospital that would be able to care for Madilyn and she was delivered shortly after we got there via c-section. Madilyn was passed immediately through the window to the nicu where she was intubated and given medication to help keep her calm. I did not see her when she was born but after a few hours I was able to go visit her.
Madilyn was stable and alive! We were excited and hopeful. Lots of tests were done. It was confirmed that she had full trisomy 18. She had no gallbladder and the doctors were worried she could have biliary atresia but thankfully she did not. At ten days old Madilyn had successful surgery to repair her diaphragmatic hernia. Her hernia was less serious than others since she had a membrane across the hernia that kept everything else out of her diaphragm.
Madilyn had ups and downs with her oxygen needs after surgery. At about 5 weeks old she was able to wean from the jet ventilator to the conventional ventilator and we were finally able to hold her! Over the next couple weeks she started improving a lot. We were even starting to talk about the possibility of extubating in a few weeks.
Then she had a heart attack… She seemed to be recovering well and I was able to hold her but then she had another heart attack in my arms. This time her heart stopped. The doctors and nurses responded quickly and were able to successfully resuscitate her. It was terrifying. The days following we looked for answers as to why she had these heart attacks but could not figure out what exactly was wrong. We were all worried we would lose her. Madilyn slowly started to improve, but continued to have problems with ischemia. She was stable on lots of pain meds, sedation, and heart meds. We kept looking for answers and were eventually able to find an abnormality in her coronary artery. Because of the complexity of her heart, surgery was not an option. We held out hope that somehow things would change. After a lot of research and talking to other specialists the doctors came to us and told us they had done everything they could do medically. Madilyn’s heart was not getting better. She was stable and growing, but we had to keep going up on her pain meds and we were worried that she would have another big heart attack and that it would not be something she could recover from. She was also still having daily ischemic episodes (basically mini heart attacks). We made the hardest decision we’ve ever made and decided to let Madilyn go. We spent a few days after that decision snuggling her and taking hundreds of pictures. We were able to arrange for her siblings to meet her the day before we pulled the breathing tube. She passed away peacefully in the hospital after 11 weeks and 1 day.
There is a lot of talk about “quality of life” when faced with raising a trisomy baby. It is an overwhelming question to answer again and again. I felt that a good quality of life was one where my baby could feel joy. I did not feel medical interventions would take away from her ability to feel joy. During the last couple weeks one doctor told me to focus on the quality of life instead of the quantity. I appreciated that perspective. We spent many wonderful hours just enjoying our sweet little girl. There are many things I wish could have been different but I will always treasure the time I had with Madilyn.
I will also forever be grateful to the many people at the hospital that helped care for Madilyn and our family and helped our whole family create good memories during a difficult time.
Written by Brittany Florence, Madilyn’s mom.